Dear Ms. Wright, Autism Speaks and any others out there who may read this…

Dear Ms. Wright,

I don’t have your email address or phone number, so I write this letter and will post here and PRAY that some how it will get forwarded around and someone will see it and show it to you, because you need to read it.

I will start off by saying that I take full responsibility, I should have known better than to read something when my boy was home. With that said… I will continue on.

This morning I started reading my emails and posts the way I always do, every morning in between making breakfast, school lunches and before it is time to drive my boy to middle school. Jay had gone up stairs to brush his teeth and I was enjoying my morning coffee and catching up. I was reading a post from one of my favorite bloggers, Jess from a diary of a mom and decided to click onto the Autism Speaks link she posted and read for myself what you wrote on the eve of Autism Speaks’ first-ever national policy and action summit in Washington, D.C.

As I said before I should have known better.

I had just scrolled down to part where you wrote this, “And, what about their parents? How much can we ask them to handle? How long will it be before the exhaustion makes them ill? How long before they break?” My boy had entered the room without a word, amazing how quiet he can be when he wants to. He slithered like a snake behind me and started reading, unbeknown to me. I suddenly felt a tap on my shoulder. I looked up and he simple said to me…

“Mom, do I make you ill?”

I am crying as I type this. I spent the entire morning trying to be calm and matter of fact like undo this and silently praying the whole time that he did not just say it is “okay” because he knows how upset I was because that is what my boy who has a shit load of empathy (sorry about the curse words) would do.

I am writing this and I pray that you some how get it Ms. Wright, and that from this point further you will choose your words more wisely, because I never ever want to see that look on my boys face again!

This has to stop! Never mind the horrible message we are sending to parents of autistic children that their kids are broken and need to be fixed, that they are burdens and not whole and that they are the reason for broken marriages and all that is wrong in the world.

Never mind the message that we are sending to people who know nothing about autism at all. That Autism only looks like the picture you painted, one that is to be feared. I assure you that what you described is not our autism. Our autism looks like my boy holding a 4th place trophy that he received while competing in his first ever United States Chess Federation Ranked tournament this pass weekend. A tournament that was filled with challenges for him, but for which he overcame with more grace and dignity that I ever could and I don’t have autism. Our autism has just as much laughter as it has tears, just as much triumph as it has tribulations.

What kind of message are we sending to our kids? I’m ill right now alright… but not because of Autism, but because of the simple fact that a powerful organization with so much money that could do so much good for our community just set my family back a bunch of steps. I work every day to build my boy up, to give him the self-confidence to go out in a world that already does not understand diversity and where different is not accepted. To think that in one single sentence he read, because an organization has Autism in its name and therefore supposedly has creditability in his eyes, my boy was knocked down.

I will repeat that… my boy, my sweet, intelligent, funny empathetic, LOVING boy who oh yeah just so happens to be autistic… was knocked down.

I know you do all that you do with the best intentions. You love your grandson. I can appreciate how that love would make you want to move mountains for him. I too want to move mountains. But even more than moving those obstacles for my boy, I believe in building him up so he can go out in the world and move them himself! I believe in making my child feel worthy, that he is perfect just the way he is, because well, HE IS PERFECT JUST THE WAY HE IS! And although he may have challenges, he is capable of doing anything. And most of all I never ever want my boy to feel as if he is some type of burden to me, his family to society because he is not!

Jay if you are looking over my shoulder now and reading this… YOU my dear boy are certainly no burden. YOU are a blessing. YOU are PERFECT JUST THE WAY YOU ARE and do not let anyone ever make you feel differently!

Words matter… what our children hear matters even more.

I take full responsibility, I should have known better than to have read that when he was around. But you Ms. Wright, you should have known better than to have written it!

Oh, that breaks my heart. This is exactly why Autism Speaks’ message cannot continue to be the dominant one. I don’t want your beautiful son to feel that way. I am confident you will help him understand.

Thank you for sharing this. It prompted me to have a conversation with my son about Autism Speaks and how sometimes people who mean well can say hurtful things. I told him that his dad and I don’t always agree with things that other people say about autism, and that if he ever reads something that worries or upsets him he should come and talk to one of us about it. I also wanted to let you know I shared this post on Autism Life’s FB page, since the conversation in the thread turned to why were Ms. Wright’s words problematic. I hope you don’t mind! My apologies for not checking with you first.

Sharon,
I am the mother of an Aspie an another boy with autism. I suffer from Fibromyalgia and anxiety attacks on almost a daily basis. I do have professional help in my life. That being said, unfortunately, our life is filled with more tears than laughter. Daily meltdowns, starting as early as 6 am as often as 5 days a week lead to lack of sleep, horrible school days, and family outings and vacations are nonexistent. I envy parents like you that are able to constantly see and write about the good that they have found in autism, as it has made my life a virtual nightmare. I feel more frustration, self anger, and guilt than I do love for my children. I wish I could feel differently, however I have no support system. I do not have the resources for help or assistance. I usually cry myself to sleep every night. I can understand how the words or Mrs. Wright may have been negative to you, but knowing that one individual actually takes into consideration the feelings, frustrations, trials and tribulations of a parent who has been broken by autism, can be comforting, and worth more than I think you could understand.

I am sorry that you are going through tough times but this is my point… it may not always be like this. To make comments like Mrs. WRight made, while it may offer you some comfort now, it also, in my opinion, offers no HOPE. It is times like what you are going trough ow when you need HOPE more than anything. You are not alone and it can and will get better. There are resources available who can help you if financially as well. Have you looked into AutismCares.org, or Aid for Autistic Children’s Foundation. Talk to a social worker at the hospital about respite Care to give you break and let yu see things in a different light or at least to just sleep. I am not against what Autism Speaks is trying to do. I too believe things have to change. we need insurance reforms and programs to help our kids transition into adulthood. we need better trained teachers who understand our kids and have access to the tools that will help them succeed. BUT that said, we also need a change in attitude. Everyone deserves to be treated with dignity and respect. Just because someone cannot speak or communicate in a way that we think they should be communicating doesn’t mean they don’t understand what is going on. What hard would it do to give these folks a voice. There are no autistic individuals on the board at Autism Speaks. What other disability advocacy group do you know of that doesn’t have any of those disabled folks on their board? This is my problem.

Once again I say I am sorry that you are going through tough times. I am sorry that it is hard to see the good things more than the bad but there is HOPE. There has to be hope and any group, person or anything else that gets in the way of that to me, well that just ain’t happening on my watch! Hugs… you are not alone.

Not to mention the fact that AS only spends four cents of every dollar received to actually assist people. The rest is used for their fear mongering publicity and useless research.

Things can be hard, life can feel terrible, but there are appropriate ways to deal with that and communicate with others about it. Primarily in ways that are going to be helpful to the person going though it, or at the very least not harmful to others. Having the most prominent autism organization publicly stating this as the ultimate reality of autism is harmful on so many levels. It’s fine to want to know others understand, or are in the same boat or what have you. That’s what private support groups, message boards and the like are for. Not press releases to the world at large.

You have my utmost sympathy for your struggles. But these are not entirely the result of autism. I know because a dear friend of mine struggles similarly… with a child who is typically developing. She loves her son, but is often at the breaking point, because she too has both physical and emotional disabilities and lives in poverty and struggles with being able to care for her child in even the most basic ways. She deserves better– as you do. Her child– and your child– deserve better.

Here is another reason I hate Autism Speaks. With all the money they raise, only 4% goes to family services. If you had the resources you need– more professionals to help you care for your children and give you time off, therapists who could identify and minimize the triggers of your children’s meltdowns, access to a school that your children are happy to attend, etc… I think your life would be much better than it is now.

And even with the frustration and pain you feel towards your children, would you really want them to hear the words of people like Mrs. Wright and hate themselves for who they are? I cannot believe that you would want to inflict such misery and shame on them, no matter what they have put you through.

There are ways to support parents like you that don’t involve putting down your children, and I hope more organizations will work towards that goal.

The whole reason I named my blog Dmitry Laughs is because he does. He’s not miserable, he’s not dying, he’s not kidnapped, he’s not missing in my life. He’s right here with me, interacting. Everything in his life is filtered through autism, and to hate “everything autism” is to hate HIM.

I am definitely aware of other parents who have severe difficulties with their children, but that doesn’t mean they’re lost. Ms. Wright of Autism Speaks paints with far too wide of a brush when she characterizes autism as MISERY, DIVORCE, DESPAIR, FEAR, SUICIDE. She has overplayed her hand.

This highlights one of my biggest concerns about organizations like Autism Speaks — they seem to have no idea that at least some actually autistic people are *listening.* Trying to get my son to feel some pride and connection when the world outside is telling him he’s a freak… when I can’t even take him to the toy store without running into an autism campaign that denies his personhood and depicts him as a puzzle that needs solving and an object of pity…

Hugs to you and your sweet boy from me and mine.

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